Thursday, March 24, 2011
I have been thinking of all the experiences that I have had during this journey with Lila, while there have been more tears than I thought possible we have had some sweet moments. I have been very touched by the outpouring of love from people, and for that I would like to say thank you. I have received kind notes in the mail or from email/facebook from individuals that I haven't talked to in years. People that I have never met have been praying for our family. Friends have brought dinner (everyone knows that's not my specialty) Friends have taken over church callings for me without judgment or resentment. I have had friends sit and cry on the phone with me, both of us to overcome to even try to speak. I have wonderful family who have checked in on us and supported us through hospital stays, check ups, feeding tubes and treatments. Even kind comments on this blog have been appreciated and have helped to bolster me up.
I have been most inspired by the mothers of other special needs kids. Mothers who have been dealing with this for far longer than I have called to offer advice and an ear to listen. I am amazed by one mother who has never met me but who has put in hours of searching for resources and answers despite taking care of her own child with needs. Another mother who has been dealing with feeding tubes has offered her advice and her expertise. Another mother whose child who has a terminal degenerative disease has called me and checked up on me and offered to help me navigate the primary neurology world. When we got out of the hospital this time a sweet note with a bowl full of candy was waiting on our doorstep from her. In her note (I hope she doesn't mind if I share) she talked about how she found a way to cope. She gave me a little bracelet that said courage on it. She explained that she wears hers everyday to remind herself to be as courageous as her little one. She feels comfort to know that her and her daughter probably volunteered for this in the life before this. Those two thoughts have been on my mind a lot these days. Lila is such a sweetheart. She doesn't interact much but her spirit is overwhelming. She is special, and I know I need to become the mother that she deserves and chose. She is courageous, she's my hero.
I wanted to put a few of the quotes on here that she gave me because they gave me so much peace. I hope that they may give others some as well:
"This is Courage in a man; to bear unflinchingly what heaven sends." - Euripides
"Most of the heartache, pain, and suffering we would not choose today. But we did choose. We chose when we could see the complete plan. We chose when we had a clear vision of the Savior's rescue of us. And if our faith and understanding were as clear as it was when we first made that choice, I believe we would choose again." - Bishop Richard C. Edgley
"No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God" - Orson F. Whitney
"Casting all your care upon him; for he careth for you" - 1 Peter 5:7